Frustration/Prednisone Question

Foxnhound8 · Post by **Foxnhound8** » Fri Jan 14, 2011 10:12 am

After a terrible New Years eve, my Dr. started me Apriso along with the Entocort (that didn't seem to be doing much after 2 weeks). I got better and better and then even had 5 days of sleeping through the night. Then some kind of stomach flu (102 degree fever, headache, nausea) and I'm back to being up several times a night with the watery stuff again. Dr. doesn't think Entocort is working and wants to put me on prednisone. I'm not real wild about that, but has anyone used it to get a flare calmed down and then gone back off of it with good results? I sent my samples to the lab and am trying to be patient, but I have to say chicken broth and rice is getting old.

Foxnhound

Post by **tex** » Fri Jan 14, 2011 11:27 am

At least one member has had spectacular results from a short course of prednisione, followed by Entocort. You can read about his experience here:

http://www.perskyfarms.com/phpBB2/viewt ... prednisone

Note that his report was posted over 4 years ago, and as far as I am aware, no one else has duplicated his success with that treatment since then. Of course, that may just be because no one else had a GI doc who was willing to try such a treatment regimen.

It's possible that you and your GI doc didn't give either the Entocort or the Apriso, enough time. Not everyone gets fast results from them - we are all different. Apriso especially, takes a while before starting to show benefits. Also, when you are taking two meds at once, if you have an adverse reaction to either one of them, it will prevent the other drug from working. That's why I always recommend taking only one drug at a time, when treating MC. Taking two drugs at once does not really significantly enhance your odds of seeing improvement, but it really escalates the chances of an adverse reaction that will totally confound the treatment.

You might try dropping the Entocort and continuing to use the Apriso alone, for a few weeks, to see if that will do the job. The reason I say several weeks, is because it takes a while to get all the Entocort out of your system, and if you are having an adverse reaction to it, the reaction will continue until the residual amount of budesonide in your body is low enough to be below the threshold for a reaction.

Tex

Foxnhound8 · Post by **Foxnhound8** » Fri Jan 14, 2011 11:44 am

Thanks Tex. Any positives in that direction really helps. I'll try the prednisone. When I read about so many people trying so many different things that take such a long time to help, I feel like a whiney puke only having this disease since October. I really appreciate the site!

Foxnhound

Foxnhound8 · Post by **Foxnhound8** » Fri Jan 14, 2011 3:02 pm

Well Dr. has me starting Colestid, no steroids for now. Hmmm. Guess we'll see where that leads.

Foxnhound

tcorbett · Post by **tcorbett** » Fri Jan 14, 2011 3:53 pm

Not to be Johnny Raincloud here - but, my GI had me on 60mg of prednisone, had to cut to 40mg because I wasn't sleeping more than 3hrs/day - I was so wired - got lots done I'll tell you. I was cranky, and it didn't help my D at all, my GI was shocked. Then he forgot he had me on it for 4 months - took me off slowly - good thing - I was getting hand and foot cramps from the prednisone, hair loss, then when I was off it, I gained 20lbs in 2 1/2 weeks! Yikes! I was not happy with these results.

I am on Apriso now, been on for 2 months - very little improvement - but my GI still wants me on it for now. I guess it takes time to work. I agree with Tex, that trying 2 meds at the same time makes it hard to know what is working and what isn't.

My GI was putting me on Prilosec for my heartburn, which has gone away, so I didn't start it. She didn't want to put me on the new antibiotic for the MC - it's a trial thing. But, long story short, she wanted to do one thing at a time.

I don't know if this makes any sense.

take care - I hope things get better really fast, I know how frustrating set-backs can be.

Theresa

Post by **tex** » Fri Jan 14, 2011 4:25 pm

Foxnhound,

That's bad news, unless you are still taking the Apriso. Colestid is nothing but a bile acid sequestrant, and it does absolutely nothing to address the inflammation that is causing your MC symptoms. It happens to have the side effect of causing constipation for many patients, (it's primary use is for patients who have had their gallbladder removed), and who have problems with the constant flow of bile causing D, until their system becomes accustomed to the change and adjusts to it. Anyway, it amounts to treating a symptom, but does nothing to treat the cause of the problem, when prescribed for MC.

It's not an unreasonable choice, when used with an anti-inflammatory drug, or when used in combination with the right diet changes, but if it is the primary treatment, your inflammation will go untreated.

Theresa,

Wow! Your GI doc should have had his butt kicked for forgetting that you were taking prednisone that long.

It's a wonder that you didn't have serious withdrawal problems.

Tex

hoosier1 · Post by **hoosier1** » Fri Jan 14, 2011 7:28 pm

Agree with Tex,

I have bene prescribed, in the past, both Questran (powder) and Colestid (pill form). It just slows things down a bit. And for me now, Colestid would bind me up like concrete. Need to address the inflammation. Though, anything to combat the symptoms is a welcome addition too.

Rich

Gloria · Post by **Gloria** » Fri Jan 14, 2011 10:51 pm

I'm pretty sure that JoAnn took prednisone for a week to jump-start Entocort, because it wasn't doing the job the second time she used it. After she jump-started with prednisone, Entocort worked, and she's now in remission w/o any meds. She writes about it here: http://www.perskyfarms.com/phpBB2/viewt ... prednisone

Gloria

Foxnhound8 · Post by **Foxnhound8** » Sat Jan 15, 2011 6:28 am

Thanks guys and gals. Dr. left me on Apriso and wanted me to take the Colestid to slow down the flare. I've only been on the Apriso for a couple of weeks. The Apriso got started because the Entocort wasn't touching any symptoms. I had a few good days there...sigh.

foxnhound

Gloria · Post by **Gloria** » Sat Jan 15, 2011 7:18 am

Foxnhound,

It can take up to four weeks for Entocort to have an effect. We are all different and it will have a different rate of success for each of us. It took 3-4 weeks for me.

Gloria

Polly · Post by **Polly** » Sat Jan 15, 2011 8:05 am

Hi Fox,

You mentioned sending samples off to the lab. I guess I missed it, but what tests are you having done?

I do think that a short course of prednisone to "bombard" the gut inflammation, followed by Entocort for as long as necessary (and this can mean a year or more in the most difficult cases) is a very reasonable treatment recommendation. Are you doing anything about diet at this point?

Hang in there......as you can see from reading, you will get your life back! I know you probably feel hopeless and frustrated much of the time, but we are here to tell you there IS life after MC!

Love,

Polly

Foxnhound8 · Post by **Foxnhound8** » Sat Jan 15, 2011 8:49 am

I sent stool and buccal swabs to Enterolab and paid the $369.00. I'm not sure exactly how in depth the food sensitivity results will be, but I figured it would be a start and give me some idea what to do besides the gluten thing.

foxnhound

harvest_table · Post by **harvest_table** » Sat Jan 15, 2011 10:08 am

Hi Foxnhound,

I had success with Pred- took a 2 month round shortly after my CC DX and it worked wonders for me. The only problem I recall was towards the very end of it developing some minor moonface like symptoms. I don't remember the dosing though.

Following the 2 months of Pred I took Entocort for 6 months and strongly feel this tandem combination of medications played a major role in my early recovery process.

You can read more in this post (I can hardly believe it's almost 6 years old).

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=198

Since weaning off the Entocort I've been controlling my symptoms with diet alone and managing fairly well however, it's been quite a journey and learning experience (to say the least) and continues to be to this day.

Take care and hang it here!

Love,

Joanna

Foxnhound8 · Post by **Foxnhound8** » Sat Jan 15, 2011 12:59 pm

Thanks Joanna,

I will be talking with my Dr. next week. For some reason, your course was what I was interested in doing. DH is a physician at the same hospital where the GI group is I see. He had lunch on Friday with one of the docs who thought the pred/entocort thing was a common way for them to treat, but the doc I have currently wanted to do the Colestid. I'm going tosee if I can get my treatment changed.

foxnhound

harvest_table · Post by **harvest_table** » Sat Jan 15, 2011 4:34 pm

Foxnhound8 wrote: When I read about so many people trying so many different things that take such a long time to help, I feel like a whiney puke only having this disease since October.

Foxnhound,

Your not a whiney puke but I understand why you say that. I also found the Potty People right after my DX and remember feeling the same way. At the time, it was tough to read posts and wrap my arms around so much information because I was just so sick and needed immediate relief-nothing wrong with that.

Also, making major diet and lifestyle changes is not easy, especially when your not feeling well. Based on my experience, I think that's a good action plan to try and crossing fingers and toes in Fergus these medications will work for you and provide a much needed reprieve and healing time.

Best of luck and keep us posted.

Love,

Joanna